Who Will Care for My Child When I'm Gone?
Gloria Lenhoff can sing in thirty languages. She has performed operatic arias and classical lieder with orchestras and chamber groups throughout the world. She has participated in High Holiday choirs and served as guest cantor or assistant cantor at synagogues in four states. But Gloria’s dazzling musical accomplishments do not stop her parents from worrying about her future.
Gloria has an IQ of 55.
Born with serious physical and mental disabilities that baffled her parents and doctors, it was not until 1988, after the thirty-three-year-old was featured in a PBS documentary, “Bravo Gloria,” that the Lenhoffs learned from viewers, and then physicians, that she had Williams Syndrome. The condition unknown at the time of her birth, is caused by the absence of about twenty genes from a particular chromosome. As a result, explains her father Howard Lenhoff, “this genetic anomaly renders in the majority of Williams people a love of music and, in some, an exceptional talent.”
After living at home for more than forty years, Gloria became a resident of the Baddour Center, a 120-acre Methodist-run community in Senatobia, MA for people with mental retardation.
“We had to confront the question of who would take care of Gloria after we die,” says Dr. Lenhoff, 72, a biologist who suffered a mini-stroke several years ago; his wife Sylvia, a retired university administrator and educator, is being treated for breast cancer. After a long, fruitless effort to heighten Jewish awareness in Southern California of the needs of “our retarded,” the Lenhoffs decided to place Gloria in the care of a Christian “safe, wholesome, and loving village for mentally retarded people that also has a strong pogram in music. Although our hearts would be lighter if we could find a comparable Jewish village, we’ve had to give up on providing a Jewish environment so that Gloria’s safety [she suffered serious injury after being hit by a car in 1991] and musical needs can be satisfied.” The Baddour Center’s choir, “The Miracles,” tours 15,000 miles a year singing in praise of the Gospel. With the addition of Gloria, Hebrew melodies have been added to their repertoire, as, for example, in their November 30, 2000 performance at the Kennedy Center.
The Lenhoffs’ dilemma reflets the struggle often confronted by Jewish parents of cognitively impaired adult children, an estimated three percent of the general population. Dr. Lenhoff, a former resident of Costa Mesa, California, describes his family’s experience with the organized Jewish community as “discouraging.” He cites a survey by the local Jewish Federation in Orange County, California which rated helping the Jewish “retarded” as the thirty-fourth priority on a list of thirty-nine. “Many retarded people have talents,” says Dr. Lenhoff, “but people expect nothing from them—so they do nothing.”
Gloria’s situation is a case in point. At a young age, she demonstrated a great love and capacity for music. Her parents bought her a half-size accordion to get her started. At the age of eleven, she began voice lessons, singing Mozart and Handel right off, although she couldn’t—and still can’t—read music. At her bat mitzvah, her father remembers, she sang a selection from the Song of Songs in her lyric soprano voice with perfect pitch and precise enunciation. “At the reception, she picked up the new, full-sized accordion we had bought her only a few weeks earlier and, almost miraculously, played the ‘Anniversary Waltz’ for her grandparents’ fortieth wedding anniversary.” Yet, at the time, no Jewish camping programs would accept her, so she attended church-sponsored camps. “She came home singing ‘Jesus Loves Me,’” Dr. Lenhoff recalls.
In July 2000, after she performed Samuel Barber’s Knoxville, Summer of 1915 with the Tifereth Israel Community Orchestra of San Diego, conductor and music critic David Amos wrote: “This is a grueling, difficult work, with unusual rhythms, awkward melodic intervals, and a text by James Agee that would push the memory of any soprano at any professional level. . . . Gloria. . . managed through all these hurdles practically flawlessly—[with] emotion and communication.” And Gloria has chanted part of the Yom Kippur service at Temple B’nai Israel in Tupelo, Mississippi (the birthplace of Elvis), where she serves as cantorial soloist.
Still, the Lenhoffs say, a general lack of understanding and responsiveness of the Jewish community is evident in just how little its agencies have done to meet the long-term needs of the developmentally disabled. “We are fortunate in having the means to pay the $1,600 monthly fee for our daughter’s care,” says Sylvia Lenhoff. “But what about those children whose parents do not have the financial resources or would never consent to placing their sons or daughters in a village with a strong Christian orientation? Wouldn’t it be a mitzvah if the United Jewish Communities helped organize and fund such villages with a Jewish base in different areas of the country?”
Gloria Rimland, whose forty-four-year-old son Mark has autism, concurs with the Lenhoffs. "Jewish community leaders don’t want to admit there is a problem,” she says. “They stress programs for gifted children instead.”
Mark is gifted in his own right. An artist who has had one-man shows and illustrated a children’s book, The Secret Night World of Cats, written by his sister, Helen Landalf, he was one of the individuals Dustin Hoffman studied for his role in Rain Man. Mark’s father, Bernard, served as the movie’s chief technical consultant in his capacity as founder of the Autism Society of America and director of the Autism Research Institute.
A past president of a Conservative synagogue in San Diego, Gloria Rimland serves on Catholic boards and donates money to Catholic institutions that provide special services to the developmentally disabled. Mark lives with his parents; attends St. Madeleine Sophie’s Center, a Catholic day program; takes computer and swimming classes; and paints and displays his work in the art studio his parents developed in conjunction with the center. The center provides vegetarian food for him so he does not have to compromise kashrut, but non-Jewish holiday celebrations are almost unavoidable. “He’s not forced into the celebrations,” says Gloria Rimland, “but he’s completely surrounded by that culture. Not having a Jewish alternative is a great disappointment to us.” She adds that, despite her leadership in her own synagogue, she has heard many negative comments about members and guests who are developmentally disabled. If Mark attends synagogue events with his family, the Rimlands take a whole table because “people are uncomfortable sitting with us.”
The Rimlands would have considered placing their son in a Jewish group home, but none exists in San Diego. “I don’t want him to be away from family,” Rimland says. “A non-Jewish home is a last resort. Mark has been able to function well in the community, and I want him to have that freedom as long as I can watch over him.
“The Jewish community can begin exercising its responsibility simply by recognizing that there are Jews with developmental disabilities,” she adds. “But we can’t wait and let our son’s lifetime disappear. We’ve gone where he’s appreciated and loved.”
Becca Hornstein of Phoenix, Arizona says she would never consent to placing her twenty-six-year-old son Joel, who also has autism, in a non-Jewish setting. “He has a Jewish identity,” she says. “How can I put him in a residence where he will go to church on Sundays?” Therefore, she has taken matters into her own hands—she has established a Jewish group home where Joel can live and “learn a degree of independence.”
Hornstein has been on the front lines of this issue for over twenty years. She is executive director of Council for Jews with Special Needs, a nonprofit agency she created in 1985 to assist individuals with physical, developmental, emotional, or learning disabilities and their families; and provide funding for special education teachers, tutors, sign-language interpreters, camp staff, support groups for parents and siblings, social clubs, disabilities workshops, and speakers bureaus. In addition, CJSN distributes a list of residential programs for people wih special needs in twenty-two cities in the United States and Canada.
Like Gloria and Mark, Joel demonstrated remarkable talents. Although at twenty-one months he stopped talking, looking people in the eye, and became selectively deaf (he didn’t respond to spoken language, but he did to music and television), by the age of two he could read and write. Six months later, he added and subtracted, and by the time he was four, he was multiplying multiple digits by multiple digits. Because of these exceptional skills, he was three and a half before he was diagnosed correctly. The physicians who treated him were looking for the total nonverbal, non-interactive symptoms of profound autism, says Hornstein. At fourteen, he became one of the first two students wit special needs to enter the Phoenix public school system. But because Joel didn’t regain his speech until the age of eight, no Jewish programs would accept him for lack of a sign-language interpreter. When the family moved to Phoenix in 1983, Hornstein recalls, “I called every congregation in town, from Orthodox to Jewish renewal, asking if they had special education classes, a sign-language interpreter, or support groups for families with disabled children. The answer was no. They had handicapped parking spaces, so the children could get to synagogue. But once they were there, they couldn’t do anything.”
Undeterred, Hornstein decided to become active at Temple Chai, a Reform congregation of seventy families, and asked Rabbi William Berk to tutor Joel for his bar mitzvah. The rabbi began a class for Joel alone. Soon, three other students enrolled; today the 1,000-family congregation’s religious school offers a continuum of special education options to 110 students with special needs. “I was blessed to find the right rabbi and right school director to embrace the message that the Jewish community includes everybody,” says Hornstein, who is one of the charter members of the Reform Movement’s Liheyot Committee, which helps congregations meet the needs of people with disabilities.
Joel’s bar mitzvah in 1987, Hornstein recalls, “was an unparalleled spiritual moment. He knew at the bar mitzvah that he was special. He wasn’t special needs or special education that day. You can’t find a moment like that often in the life of a specia lneeds child.” As he got older, however, Joel no longer benefited from specialized, supervised Jewish activity, so Hornstein’s Council for Jews with Special Needs formed the “Yad B’Yad” (Hand in Hand) social club for adults, in which thirty memgers, from eighteen to forty, enjoyed Shabbat dinners, holiday celebrations, mitzvah projects, bowling, swimming, and miniature golf. Joel worked full-time in the public library, his “computer-perfect” memory allowing him to remember the location of every book, video, and magazine.
Like the Lenhoffs, Becca Hornstein also got a wake-up call about her child’s future. Two years ago, at age fifty, she was diagnosed with breast cancer. “Hopefully, I will live a long time,” she says, “but talk about a reality check. It’s almost as if God tapped me on the shoulder and said, ‘you might want to put this on your list of priorities.’”
When Hornstein felt strong enough, she conceived of a plan to open a group home for four male residents, with “chanukiot, not Christmas trees, and seders, not Easter hams—a home big enough to invite twelve friends over for Shabbat dinner or a Sukkah party.” Hornstein raised the funds to purchase and renovate “Shalom House,” and last August, Joel and two other men with developmental disabilities moved in. “It’s been a fantastic experience for him,” Hornstein says. “We see a lot of growth and maturation. The three men went to Temple Chai for Simchat Torah and attended a Shabbat dinner sponsored by the Jewish Community Center, where they were warmly greeted by dozens of families. We host Shabbat dinners at Shalom House each week with different families as guests. And the special-needs adults social group, which meets at Shalom House each weekend, celebrated a group b’nai mitzvah in January!”
Becca Hornstein recognizes the difficulty parents face in separating from an adult child who is still dependent—physically, emotionally, and mentally. “Parents are torn between wanting to make arrangements for the children and battling the inclination to hug them closer and protect them more,” she says. “More parents would let go if more Jewish homes were available.”
Marny (Marjorie) Liebschutz, 57, has already found her place in a Jewish group home in Silver Spring, MD. Her brother, Rabbi Thomas Liebschutz, says the home, one of eighteen residences run by the Jewish Foundation for Group Homes, is a “blessing” for the family.
Marny, who was born with cerebral palsy, had been living with her mother in Rochester, New York until her mother grew too infirm to care for her. It was not until Rabbi Liebschutz moved to Washington, DC in 1994 to serve as rabbi and director of religious services at the Hebrew Home of Greater Washington that he became aware of the Jewish group home option.
Founded in 1982 and funded by the Jewish Federation, United Way, state monies, and private pay, JFGH offers group homes in residential neighborhoods and apartment programs to people with chronic mental illness and developmental and physical disabilities. Currently, it has a waiting list of 200.
When Marny was accepted into a group home in April 1995, everything changed. “Marny had been wondering and worrying what would happen to her,” Rabbi Liebschutz says. “She was greatly concerned about her future.” In Rochester, Marny had been homebound most of the time, and her circle of contacts was small. In Washington, she found a built-in family of housemates, each with a paying or volunteer job. Marny now volunteers at the Hebrew Home, where she is part of the daily minyan, participates in social and religious activities at the JCC and local synagogues, visits and transports residents in wheelchairs, and helps prepare an occasional Shabbat meal. “My sister has a much more fulfilling life now,” says Rabbi Liebschutz. “She feels needed and worthwhile.”
Though a few local Jewish communities have provided resources to accommodate people with special needs, the status quo, say the Lenhoffs, is a “national scandal.” “Why,” they ask, “should it be necessary for individual parents, mostly aged or infirm, to pursue this mitzvah alone? Why is it not on the national agenda of the organized Jewish community?” Meanwhile, determined activists such as Becca Hornstein are taking matters into their own hands, helping the Jewish community appreciate the blessings of sons and daughters who live with physical, emotional, and behaviorial disabilities.
Rahel Musleah is author of Why On This Night? A Passover Haggadah for Family Celebration (Simon and Schuster) and Sharing Blessings: Children's Stories for Exploring the Spirit of the Jewish Holidays (Jewish Lights). She presents programs on the Jewish communities of India, where she was born.